I wanted to make a small comment, though many of this hits home when it comes to raising my 6 year old that has x-link. But hopefully I am raising him to be proud and to take the obsticals life has given him and face them head on. But every now and then I get him giggling because I tell him he's just like Wolverine since he heals so darn fast. I tell him I wish I could get over a cut, or sun burn as fast as he could. He wakes up and it's gone.

Good luck and enjoy all your adventures.
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.